Winter 2008 Table of Contents
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Texas CHARGERS Host 2nd Annual Family Retreat

By Cathy Springer, Texas CHARGERS President, Round Rock, TX

Key words: Family Wisdom, deafblindness, CHARGE Syndrome, family retreat, training

Abstract: The President of Texas CHARGERS, a nonprofit organization for families of children who have CHARGE Syndrome, shares her thoughts on the group’s 2nd Annual Family Retreat, which drew families from across Texas for a fun-filled weekend of fellowship and learning.

On September 14th and 15th, Texas CHARGERS hosted their second Annual Retreat at Peaceable Kingdom in central Texas. Peaceable Kingdom occupies approximately 125 acres on the Lampasas River in Central Texas scenic Hill Country.

On Friday evening, smells of juniper and freshly cut hay filled the air; the hot Texas sun gave way to a beautiful sunset as members arrived at the beautiful rustic log lodge. Families were greeted by members of the board and volunteers who distributed gift bags filled with information and colored t-shirts. Parent received red shirts, kids blue, and grandparents green, so as the weekend progressed it was easy to spot a fellow parent, grandparent or sibling. Twenty-six Texas families with CHARGE kids ranging in age from 6 months to 22 years participated, including a total of 130 family members.

CHARGERs parents and children group photo

Saturday was filled with activities for the families including a carnival complete with bounce house, games, train rides, snow cones and picnics. Volunteers assisted in providing care and entertainment for the children while parents had an opportunity to participate in presentations given by service providers from several agencies including: Helen Keller National Center, Texas Parent to Parent, Department of Rehabilitative Services, Texas School for the Blind and Visually Impaired, and Hands Free Entertainment.

Judy and Dane A powerfully moving presentation was given by, Judy Robertson, mother of Dane who is a 17-year-old CHARGE teen, who managed to capture the hearts of everyone with his piano playing and sense of humor. Judy shared candid stories of her struggles and issues and gave everyone such hope when she shared in her son’s triumphs including being mainstreamed into school.

Dane also gave a short presentation in which he shared what it is like to battle society’s stereotyping of kids with disabilities. His knowledge of music and computers demonstrated the places children with CHARGE can go. He delighted the audience when he joked, “Well I am a senior in high school, my sister is a senior at college, and my mom…well she is just a senior citizen.” Everyone was affirmed with his typical teenage sense of humor.

Guest speaker for the event was David Brown from San Francisco where he works as an educational specialist for California Deaf-Blind Services. He brought with him 25 years experience working with CHARGE individuals, and is currently working with 44 CHARGE children. He has presented to audiences all over the world, including the National CHARGE Conference held in California this year. His insight into how children with CHARGE perceive their world and how society reacts to them was very enlightening.

Students and parents ride park train. Brown stated that it was not his opinion that Charge kids were “mentally retarded”, but were challenged by certain missing functions that might lead society to perceive that children with CHARGE are mentally retarded. The acronym “CHARGE” comes from the first letter of some of the most common features seen in this syndrome: C–Coloboma or Cranial nerve abnormalities; H–Heart malformations; A–Atresia of the choanae, a blocking of the nasal passages; R–Retardation of growth and /or development; G–Genital or urinary abnormalities; and, E–Ear abnormalities and/or hearing loss. CHARGE Syndrome is one of the leading causes, and the most commonly identified syndrome causing deafblindness in the state of Texas.

Children with CHARGE have a higher sensory sensitivity level and therefore can be stimulated in physiological ways not experienced by children without CHARGE. He assured audience members that each CHARGE child is different and has different skills. They each progress at their own pace and cannot be rushed into what parents, family, or even society might deem appropriate.

Three parents and children with their CHARGE shirts. One of the most emotionally moving moments came during the Parents Panel. Fathers and mothers shared their fears, struggles and triumphs. It was a moment that was caught in time as every word that was spoken stirred hearts with all the emotions the families have experienced.

Participants left that day knowing they had made a life-changing trip, one that would stay with them forever, each a new member of an extended family. Together they face the future, and in this endeavor, as they drove away, a new acronym came to mind—CHARGE stands for: Children Have Always Reminded us of the Goodness in Everything.

The event could not have been as successful without the participation of volunteers and sponsors. Texas Chargers appreciated their countless hours of devotion to this endeavor. Texas CHARGERS wishes to thank several organization including: the Wednesday Review Club; TSBVI Deafblind Outreach; DARS, Division for Blind Services; Region 13 Education Service Center; Alpha Phi Omega, Southwestern University; and the numerous individuals that donated time and money for this event.

The Texas CHARGERS is a group of Texas families, friends, and professionals who are dedicated to helping children and adults who live with CHARGE Syndrome. The primary function of our organization is to support the emotional and educational needs of people with CHARGE Syndrome and the families and professionals working with them, to provide them with a better quality of life.

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Last Revision: June 5, 2008